Negotiating Uncertain Terrain: A Qualitative Analysis of Clinicians' Experiences of Refractory Suffering

Abstract

In palliative care, the witnessing of unrelieved (refractory) suffering takes its toll on all concerned; however, the effect on experienced palliative clinicians of witnessing such suffering has largely been unexplored. The aim of this study was to examine health care professionals' (nurses, doctors, and allied health workers) experiences of working with a patient's refractory suffering, together with their clinical management strategies. A qualitative research design involving semistructured interviews and an online questionnaire was used to collect the data. Seventeen experienced palliative care clinicians participated; 13 with face-to-face interviews and a further 4 by an online questionnaire. The overarching theme of negotiating uncertain terrain was common across all clinician narratives. In order for them to work successfully with a patient's refractory suffering, the clinicians had to negotiate areas of practice characterized by uncertainty, with no clear directions and with few expert guides. In reviewing their experiences, they identified within an overarching theme of negotiating uncertain terrain four subthemes: Changing Approach from “Fixing” to “Being With,” Maintaining Perspective, Negotiating and Maintaining Boundaries, and Living the Paradoxes. This study highlights that dealing with patients' refractory suffering involves clinicians moving into uncertain and unexplored territory. For them to work effectively in this terrain the clinicians need wisdom, courage, and a commitment to journeying alongside the suffering person.

Introduction

Suffering has been variously defined as a state of distress caused by an actual or perceived threat to a person's integrity or sense of self,¹ a threat to personal autonomy,² and a state of anguish as a person experiences pain, injury, or loss.³ The word refractory generally means unmanageable, resistant to ordinary methods of treatment.⁴ Therefore, refractory suffering is an unpleasant condition, a threat to self, or a symptom that is not ameliorated by the usual management strategies. Suffering can be the result of physical symptoms such as pain or breathlessness, it can arise from an existential or spiritual domain, or from a combination of these; at times it is difficult to distinguish between the two.⁵ This differentiation is especially difficult as death approaches.⁶

Over the past decade there has been a growing interest in the use of sedation for the control of refractory symptoms and the suffering it engenders.^7–10 While the use of sedation has encouraged considerable research and debate in this area, less attention has been paid to the effect on the clinicians involved of witnessing suffering. Research that has been undertaken in this area has generally been on a single disciplinary group, usually nurses.^11–13 Clinicians in the face of refractory suffering often feel helpless in a situation in which their professional competence is challenged, and they respond in several ways including avoidance of the situation,^14,15 overidentification,¹⁶ and the development of compassion fatigue.¹⁷ While the “suffering of the sufferer” is often the clinicians' main focus, witnessing such distress affects all who enter the circle of care – be it family members, nurses, doctors, or allied health workers. A recent Canadian qualitative study explored the phenomenon of existential suffering from the perspectives of a range of health professionals, patients, and family caregivers who had witnessed suffering at the end of life.¹⁸ These researchers concluded that the experience of groundlessness, of being “shaken to the core” (p. 7), was universal among the participants, including both beginning and experienced clinicians. The purpose of our study is to build on these findings by exploring experienced palliative care clinicians' (doctors, nurses, and allied health workers) experiences, perceptions, and management of refractory suffering, so as to understand its nature, for as Jenkinson states (p. 25), “An understanding of suffering…is a core skill of palliative care provision.”¹⁹

Methods

We used a purposive sample of palliative care practitioners from several disciplines with at least two years clinical experience. This decision was made so that we could explore the views and survival strategies of practitioners who had clinical experience working with refractory suffering. Interviewees were invited by letter to participate in a face-to-face interview or by an online invitation sent to palliative care clinicians who were undertaking postgraduate studies at Flinders University. A total of 17 clinicians agreed to participate, 13 by interview and a further 4 by the online questionnaire. The sample comprised 10 nurses, 5 doctors, and 2 allied health clinicians (one social worker and one pastoral carer) from two services within the greater metropolitan area of Adelaide, South Australia. All participants have been identified by the pronoun “she,” although the sample consisted of three males.

The interview questions sought clinicians' experiences of refractory suffering, together with its impact on both their personal lives and professional practice, including their clinical decision-making capabilities (see the appendix). The online questionnaire, with the same questions, was made available to all postgraduate students (177) enrolled in the palliative care awards at Flinders University. Four students replied to this online version. All contact with students regarding the questionnaire was done by department administrative personnel to avoid any feeling among the students of coercion.

The authors conducted a thematic analysis of interview and questionnaire responses and then undertook cross-sectional analysis to cluster and label core themes that were interrelated and repeated. Ethical approval for the study was granted by the Repatriation General Hospital Ethics' Committee and Flinders University. Social constructivism provided the underpinning for the methodological framework for this study.²⁰

Results

Common across all the participants' narratives was the overarching theme of negotiating uncertain terrain. As experienced clinicians used to controlling symptoms and providing comfort, refractory suffering took them into areas with which they were relatively unfamiliar. In order for them to provide competent care, the clinicians had to negotiate areas of practice characterized by uncertainty, with no clear directions and with few expert guides. In discussing their experiences the authors identified four subthemes in the narratives: Changing Approach from “Fixing” to “Being With,” Maintaining Perspective, Negotiating and Maintaining Boundaries, and Living the Paradoxes.

Subtheme 1. Changing Approach from “Fixing” to “Being With”

All participants struggled with an urge to “fix” refractory suffering, despite also recognizing that it was often something beyond their control or experience. That's a big thing in nursing, when you go through your nursing degree, you are trained to follow protocols and fix things; and you can't necessarily fix everything (Nurse 5).

Having been trained to control or manage symptoms and problems, several participants recognized the limits of the problem-solving and protocol-driven approaches of their undergraduate training in dealing with something as complex as intractable suffering. I have a problem with this problem-based learning, because…the word problem implies solutions (Doctor 4). Letting go of control and a simplistic “fixing” approach required the need to “think at a slightly deeper level” (Doctor 3). Letting go of control also required that the practitioner was prepared to commit to staying with and working with the suffering person. This commitment involved a degree of courage; it was at times an uncomfortable place to be.

I don't think it's a comfortable place to be, but I think somebody has to be prepared to be there in that place…to engage with…that sense of darkness…but it's worse when no one's prepared to be there for someone, when there's no one there. I think it's a real gift – I can't do too much of it in one day. (Allied Health 2)

For this allied health practitioner, the being with was a gift that she could give people in the dark place that was refractory suffering. Yet this gift was not without its cost. This clinician also used the metaphor of moving from an heroic journey to a sense of pilgrimage to describe the type of approach needed.

It's about the move from…the heroic journey, into pilgrimage…they're actually very different attitudes to journey…there's always suffering…but there are different ways to respond to it. And there's a time for us to fight it and try and sort it out and fix it, and then there's a time when we change our perspective on it and learn how…to walk the pilgrimage if you like through life experiences. So it's about a change in perspective. (Allied Health 2)

Therefore, in order to work with those who were experiencing refractory suffering, a different attitude to the journey was required.

Subtheme 2. Maintaining Perspective: Time and Tempo

Working effectively and sustainably with a person's refractory suffering required finding clarity and perspective even though the way forward was uncertain. In doing so, the clinical approach operated differently in the dimensions of time and tempo.

Time

All participants recognized that there were no quick fixes, answers, or treatments. As one participant noted, there were…no instant solutions, I leave the door open to say, “This isn't going to be solved today” (Doctor 4). Effective clinical practice required an understanding that medications and other therapies for psychological distress do not always work immediately and, an understanding that (suffering) may be lifelong and longterm for some (Doctor 3).

Unrelieved suffering can easily evoke a sense of urgency, anxiety, and even panic within clinicians. However, this project identified the wisdom of slowing down or taking time to think (Doctor 4). This slowing down was counterintuitive, yet was seen by many clinicians as a helpful strategy in enabling a clearer perspective to be gained on what the issues really were and the next steps to be taken.

Tempo

The rhythm of the work thus involved an interplay of action, of pausing to reflect and think, of waiting for patients or families or staff to work through what they needed to, of observing, and of regularly checking to see that all that can appropriately be done was being done. Have I gone though all the checks and balances (Nurse 3)?

The action required in the situation of refractory suffering was often characterized by a different rhythm from the usual urgency required in physical symptom management. Busyness was replaced with the deliberately slower, but often more intense movements of attentive presence, listening skills, and a facilitation of the patient's or family's struggle with finding meaning in the experience. The challenge in these circumstances, you keep your head working to its full capacity…keep your creativity and your awareness as broad as you can and think clearly and analytically as well (Allied Health 2).

Subtheme 3. Negotiating and Maintaining Boundaries

Boundary negotiation entailed recognizing the difference between a therapeutic relationship and a personal relationship (Nurse 6). For example, Nurse 3 said I can't become their family. You can become their health professional, their friend.

For many clinicians, there appeared to be a line in the sand beyond which they did not venture. This line marked the boundary of clinicians' emotional involvement in the patients' world of refractory suffering. One clinician purposely detached herself from the situation. I try not to get immersed in their pain, because…that's something that I used to do a lot, and I didn't cope at all well. As I've grown more experienced in this work, I'm more able to detach (Nurse 1). Rather than having a negative effect, this emotional detachment allowed this clinician to negotiate the boundary of clinical care so that it encompassed the subjective experience and needs of the patient and family. Nurse 1's narrative continues:

I remember thinking I was maybe overstepping my mark. You know he'd given me quite clear directions that he didn't want to talk about that, but I was still persisting a little bit, chipping away…it was the right thing for me to do…it's almost like you're crossing a boundary. (Nurse 1)

Nurse 1 understood that “boundary crossing” required careful discernment, the wisdom of experience, and courage.

Subtheme 4. Living the Paradoxes

A paradox is defined as a seemingly absurd or self-contradictory statement or proposition that may in fact be true.²¹ Negotiating the uncertain terrain of refractory suffering entailed the complexities of living and working with several paradoxes. The first of these paradoxes involved the need for detachment, yet a commitment to involvement, to “staying with” the suffering person. Doctor 1 spoke of staying involved and continuing to visit a patient, although she “can't help her…just hear her out,” knowing that this continued involvement provided some comfort for the patient, without alleviating the pain. The second paradox required the need for desensitization, yet also compassion. Clinicians needed desensitization (to distress) that still allows you to have compassion and care (Doctor 3). The third paradox noted in the clinicians' narratives was that these clinicians had to accept realistic limits, yet also do everything possible.

Sometimes…you just have to accept that it is what it is – all it is. But still making the attempt to go back and try again, or do something else, or do something different or think about it harder…there's always the possibility that you've just missed something. (Doctor 3)

Some participants were consciously aware of these paradoxes operating within their practice with refractory suffering; however others' language revealed that while these paradoxical dynamics operated within their practice, the clinicians were not overtly aware of them.

Discussion

The uncertain terrain of refractory suffering – where the cause of the suffering remains unclear and resolution appears impossible – is exacerbated by the dearth of expert direction in this area. The palliative care literature focuses, perhaps naturally, on the relief of that suffering. There are very few guides that provide a road map of what to do when, and despite all efforts of expert physical, psychological, and spiritual care, some people continue to suffer. The absence of published work in this area reflects a poor or non-existent preparation for it in undergraduate and postgraduate education.

A change in approach

The shift from “fixing” to “being with” resonates with some elements of previous writings on the subject of suffering.²² One participant's use of the metaphor “from heroic quest to pilgrimage” echoes Michael Kearney's discussion of letting go of a heroic approach in working with refractory symptoms and suffering.^23,24 This participant's use of the metaphor of pilgrimage adds a rich understanding of the possibilities of developing knowledge and wisdom by embarking on a pilgrimage through suffering, as well as a sense of the profound sacredness that such a journey evokes.

Several authors have discussed letting go of control as an appropriate stance for working with suffering.^24,25 This sense of letting go of control has been referred elsewhere as “engaging groundlessness”¹⁸ (p.7). Our study concurs, yet also strongly identifies a paradox inherent in effective practice, where the letting go of control is juxtaposed with the need to do all that is possible while being with, in a conscious, accepting way, the person's experience of unrelieved suffering. In relinquishing control, there is not a relinquishment of clinical assessment and management skills, but a combining of these with another set of skills and using them within a different mindset and clinical approach.

Historically, “being with” or presence has long been a core aspect of palliative care.²⁶ While the language of “being with” is now found almost exclusively in the palliative care literature on spiritual and/or pastoral care, the nursing profession has also recognized that the ability to be present to the person with refractory suffering is an essential clinical skill.²⁷

The ability to work with uncertainty and to remain present with people in distress requires courage, commitment, and an ability to let go of the need for control,^1,25,28–30 all capacities identified by the participants in this study. In addition, Arman³¹ specifically highlighted the need for courage as a prerequisite for being able to witness suffering and to “take the necessary step into the life world of the other” (p. 91). This foray by health care professionals into the life world of another requires training in empathy, a core skill in palliative care.³² In addition, resiliency training may assist in clinicians being able to “withstand…the tidal surge of suffering”^33,34 (p. 2). And while not mentioned in previous refractory suffering literature, the capacity to remain with someone in silence, without needing to fill the silence with words or helpful advice, is also a recognized therapeutic skill in psychotherapy and pastoral care, both of which acknowledge that some experiences are too deep for words.^35,36

Balance and boundaries

Balancing closeness and distance is a recurring theme in studies involving nurses/care providers and suffering – or other difficult clinical encounters.^28,29 In a recent study¹⁸ the theme of “engaging groundlessness” (p. 4) is similar to the boundary negotiation highlighted in this study where repeated decisions have to be made on the part of the clinician about whether and how much to engage in encounters with suffering. Our study supports previous studies' findings and provides narratives and discussions of different ways individual clinicians negotiate (and discern when to overstep) boundaries.

Maintaining perspective

The study revealed the learned wisdom of experienced palliative care clinicians consciously pausing to allow time to regain perspective and clarity, before making decisions and acting, countering the natural urge to do something quickly to relieve the suffering confronting the clinician and the patient. This “stepping back” was explained to patients and families as an active part of their care, not as a “stepping away from” or abandoning them. This explanation appears to be important as physician avoidance of patients is recognized as a common response to difficult emotional situations.^15,16 This understanding of the necessity of a different way of operating in time and tempo is an essential aspect of the clinical approach needed when dealing with refractory suffering.

Working with paradoxes

A major insight that this study contributes to the discussion on refractory suffering is the understanding that paradox lies at the heart of good clinical practice. Intractable suffering entails complexity, ambiguity, and paradox. It involves negotiating and balancing paradoxical needs for involvement and detachment, empathy and desensitization, accepting limits, and the reality of the refractory suffering, yet doing all that is possible while setting boundaries (and sometimes overstepping these). Developing awareness of such dynamics operating within one's practice is a step towards conscious, wise clinical practice.^37,38

Limitations and Recommendations

The major limitation of this study, as with many qualitative studies, is the small number of participants. While the results are not generalizable to other contexts, the interview transcripts do provide a rich insight into experienced clinicians' experiences of and perspectives on refractory suffering. We recommend that specific education on refractory suffering be introduced into undergraduate health curricula, to balance the problem-based learning approach (where there is always a solution) and prepare clinicians for the reality of “unsolvable” challenges in clinical practice.

Conclusion

Our study identified several themes relating to refractory suffering, the main one being that the terrain of refractory suffering is an uncertain and largely unexplored landscape to experienced clinicians working in palliative care. Guides are needed in this challenging area, guides who are courageous, who are prepared to undertake a pilgrimage alongside the suffering person, and who can provide a human connection in that dark place.

Suffering may be made more bearable in the presence of concerned others who acknowledge its existence and function as human connections during a time of personal disruption and inner struggle to find meaning³⁹ (p. ix).

Footnotes

Acknowledgments

We wish to acknowledge the support of the International Institute of Palliative and Supportive Studies for the grant that enabled this project to take place, and the participants who generously agreed to be part of this study.

Author Disclosure Statement

No competing financial interests exist.

Appendix. Interview and Questionnaire Questions

Any other comments?

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